Persisting through pain

A long-standing tradition of artists is to use their creativity to translate their pain into great work. For art photographer Nawfal Johnson Nur, the pain is literal as he suffers from ankylosing spondylitis. He speaks to Priya Kulasagaran about his love for photography and what helps him manage his condition

As Nawfal Johnson Nur shows off a selection of his art photography portfolio, one is struck by the unique mix of emotions in his work; the images are strong and vibrant, yet there is a lingering sense of melancholy just beneath the surface. Imagined alien landscapes, inspired by specific objects, sit alongside portraits comprising photographs of fire.

Originally from Nebraska, United States, Nawfal has been a freelance photographer since 1998, with commercial work focused on cultural photo-essays and stage photography. “I love photographing dance performances, and rock concerts,” says the 52-year-old. “I enjoy the feeling of capturing the movement and energy of the performers in still images; it is definitely an art to get it right. I used to be a musician as well, so having that sense of rhythm and beats helps me anticipate what the performer is going to do next — and I can be ready to snap that moment.”

It is clear however, that a lot of his passion goes into this art photography. Inspired by the likes of painters Jackson Pollock and Mark Rotkho, Nawfal borrows the techniques of abstract expressionism and applies them to photography. For all of this, he is not a formally trained photographer, and learnt the form by studying and practising it for himself since he was nine-years-old.

“My first camera, that was given to me, was a Kodak Instamatic – then when I was 12, I got my first SLR camera, a Pentax K1000,” he shares. “I think learning to shoot with film taught me a lot about understanding how a camera works — you need to understand aperture, composition, and light work in order to get a picture at all. My best friend from high school, who is an artist, was the one who exposed me to the art world, and I was just completely fascinated by it.”

What drives his art photography, says Nawfal, is to provoke emotional responses from viewers; be it through the photograph’s subject, play of colour, or simply the combination of both. He grows thoughtful however, when asked about whether it is important for others to accurately describe his own emotions that he channels into his work. “Well, I suppose then we have to talk about my condition, and the feelings that come with it,” he says with a bemused smile.

It may not show from the outside, but Nawfal has ankylosing spondylitis (AS), a disease that is characterised by continuous pain.

Living with AS

AS is a chronic and progressive condition which affects the spine, and causes inflammation in other parts of the body. While symptoms of the condition vary, sufferers generally experience terrible back pain, joint inflammation, and fatigue.

Most people with AS are able to live independently and with minimal disability, although some can have their movement of the spine severely restricted in the long-term. This usually occurs when bones in the spine fuse up.

While there now promising, if expensive, treatments available to those with AS, these work best for those for who are just starting to show signs of the condition. For someone like Nawfal, who has been living with AS for over three decades, there is currently no way of undoing the damage the disease has already wrecked on his body.

Nawfal figures that his pain started in mid-adolescence, when he was about 15-years-old; in two years, he started experiencing bouts of back pain as well. At a time when not many were aware of AS, these aches were explained away as sports injuries or the like. The first intense episode came when he was in university for his undergraduate studies.

“The back pain got so bad that I almost couldn’t walk; sometimes I could barely breathe let alone get a decent night’s sleep,” he recalls. So I went to the campus health clinic. I don’t know if the doctor that day was just in a bad mood, or if he didn’t have bedside manners, but it was quite the experience.”

After making him bend over this way and that (a common initial screening for AS), the doctor announced to Nawfal that he had AS. “I could barely pronounce the name, and definitely didn’t have a clue what it meant. So he just gives me a brochure and says: you can read it about here. And sends me on my way,” adds Nawfal.

Understandably, with only a piece of paper to help him cope, he was devastated by the diagnosis. “There was no Google, no WebMD for me to read up on my condition,” he says. “All I knew was that I had an incurable and progressive disease that was going to be with me for life. It was only years later — in 1992 — that Nawfal went back to see a doctor.

“I had proper blood test done, and tested positive for the HLAB27 gene (the gene which carries AS). This time though, the rheumatologist was fantastic; he didn’t just give me a bunch of pills to pop as what I had been doing to cope with the pain for so long. I’ve become immune to so many of the painkillers other people use — tramadol does nothing for me. Instead, he taught me exercises and techniques to help manage the pain, and leave the pills as a last resort measure,” says Nawfal.

Walking the line

As he learnt to cope, Nawfal was also going studying for his masters in city planning —where he also met his Malaysian wife. In 1994, he moved to Penang with her, and was looking forward to the excitement of being a new city. It was then when he discovered a new symptom of AS; iritis.

A condition which causes eye inflammation, iritis sometimes affects those with AS, and usually occurs in one eye. Due to this, Nawfal has permanent damage to his right eye. While he has been “getting used to the iritis flare-ups”, last year proved to be another test of his fortitude.

“I learnt I had osteoporosis; combine this with AS, it means that the smallest of accidents can cause a huge injury to my spine,” he says. “I also was diagnosed with Meniere disease, which is a rare inner ear condition which causes vertigo and tinnitus (ringing in the ear). So that’s why I don’t drive these days, or walk too much.”

After expecting many of his days waking up in pain, being frustrated by the limitations of his body, it is understandable that Nawfal has sometimes walked down the dark road of depression.

“It’s a constant fight to get through the pain, and the other complications that come with AS,” says Nawfal. “So at some point, I was diagnosed with depression as well. The pain is non-stop — I’m feeling it talking to you right now — and it’s just a matter of how high of a level it reaches. The depression comes and goes, but when it hits, it can be a dark place to be in.”

Here, his art offered him a way out of that dark place. “I won’t say it ‘cures’ depression, so to speak. But while I am working on a piece, or trying to take the perfect picture, I have a brief respite. It’s like the self-maintenance you do to cope with the pain — eating right, doing my exercises, getting enough rest — you have to manage it,” he says.

He earnestly adds that humour, particularly in the form of The Three Stooges and Spongebob Squarepants, does help as well. “It may sound stupid, but something about the violent slapstick of the 40’s, and the ridiculousness of Spongebob, it makes my brain happy,” he says with a grin. “It may not last, but that’s what you need at that moment; a break from the despair to remind you of happiness.”

In effort to reach out to others who are struggling with their own demons, Nawfal decided to publish his book Ethereal Dreams & Hope. Featuring a collection of smoke photography alongside inspirational words, the art book is a testament to his own struggles and aspirations. “I usually self-publish a book for each of my photo collections, but with this one had a specific message,” he explains. “I didn’t want to hide the dark side of AS, the pain and the despair, but at the same time, I wanted to show the promise of hope as well. If anything, my aim is to help others think of their condition in a new light, or just keep their spirits going.”

Right now, Nawfal is giving his all to his freelancer life, straddling art and earning a living. However, his main focus remains the same: to keep taking better photographs. “If there is a philosophy towards photography that I live by, it’s the one that was (photojournalist) Jim Richardson lived by: If you want to be a better photographer, stand in front of more interesting stuff. That’s what I’m constantly looking for – interesting stuff.”

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